Chronicle of a Stem Cell Transplant
(and on through to the other side)

Saturday, March 14, 2009

So Close, Yet So Far

Well, this has been a bit of a frustrating time as we suspected it might be.

Even though the trial has moved very quickly in its expansion/approval process, and I know people are working very hard behind the scenes, waiting for it to finally open here has been difficult.

I have been having some symptoms that may or may not be related to the Hodgkin's, but as many of you well know, taking odd aches and pains for granted is not acceptable at this point.

I have some discomfort in both hips, my groin and sacrum, and weird pain in my right arm pit. These things may be significant, or they may be nothing. The first time I thought I detected something unusual under my arm, I'd hit puberty.

The second time was when I discovered a lump when we were away celebrating Ian's birthday last year. Fortunately, it turned out to be a little infection and was "drained" by an ER doctor who said it was "really gross, but nothing to worry about."

The most accurate way to get an idea of what is going on would be to have another PET scan. However, in order to be a candidate for the trial, I need to have a scan within 30 days prior to its start. While it is our hope that the trial will open here or in Seattle within the next month, we don't know for sure that it will.

The reason I don't just go ahead and have a scan now is because, generally, PET scans aren't performed more often than every eight weeks. So, if I did have one now, and then the trial opened 31 days later, I could find myself in the position of not being able to start the trial while I wait to be eligible for another PET scan. Now that would be frustrating.

Fortunately, I will be having the next best thing on Monday, an "eyes-to-thighs" CT. Hopefully, this will indicate nothing new. I'll take "gross" over "growth" any day.

About Me

I am a 32-year-old (now 36) female with Hodgkin's Lymphoma, a type of blood cancer affecting the lymphatic system. I was diagnosed in April of 2006 after an x-ray revealed a 10cm mass in my mediastinum (the cavity between the lungs and the chest). Subsequently, I've had five months of chemotherapy, but the disease has proved to be refractory, meaning it is "restless" and not responding fast enough. The next course of treatment is a stem cell transplant, the likes of which I will try to chronicle here for family, friends, and, well, voyeurs if you don't fit into one of those two catagories... In my "normal" life, I am a writer, animal lover, pseudo runner and paperphile (don't ask...) In general, an aficionado of little, but connoisseur of much... UPDATE - March 2008...After a stem cell transplant, 20 rounds of radiation, 10 more months of chemo and 5 more rounds of radiation, I am now doing clinical trials. UPDATE - November 2008...One trial down (MGCD0103). UPDATE - May 2009...SGN-35 trial (12 cycles). UPDATE - Feb 2010...Bendamustine (6 cycles). UPDATE - Oct 2010...finished Bendamustine and hoping for continued stable disease. Jesus, who's writing this stuff, anyway?